Hey Marcia, You better put bumpers of something around you with that puppy of yours. Geez what is it a rotweiler or something? You said you are having more pain now then pre pt, whats bothering you?
I had problems with the person filling in for me at work, so had to help out for coulple of days. No more I hope for abit.
Saw Mountain Readers post I am glad I am not the only one still having some issues. Went for the MRi so we will see. Arm is hurting, went to help a gentlemen (elderly), just forgot & used the dang arm, well dumb. Felt abit better up till then. Really could kick myself. This really takes along time to heal my friend.Osteo appointment today & boy I hope it helps. Whole darn area is aching.
You are really lucky to have such a good therapist. I would love to know how many people struggle after this surgery. I know there was a guy in pt still going for a couple months after his. I will not be using this arm at all for a couple or days. The whole shoulder/scapula area is so painful can't lift my arm this morning. Back to resting. Its going to take along time for this thing to heal I think. you have got to stay out of the dogs way, run or walk fast if you can't run when you see it coming (ha). Have you had any problems using that arm? If you think about it, it is not even four months post op. I heard at least for the decompression it could take up to 6 to get really feeling like its healed. I did not know abit of this before surgery, good thing to.
I know the sling can calm things down so what ever is going on movement of the arm/shoulder can really effect it. You would think mucsles tendons & such, but who knows. You know there is another poster with the SNS/RDS problems ( forgot exactly what its called) on the boards, she says its one painful condition, I really feel for you both. What exactly again caused it?
I will tell you for the MRI I took the valium, which I never take more then 1/2, it really made a difference, everythng seemed to relax. My sister in law was laughing, by the time we arrived I was abit more, shall we say relaxed. Big difference between that & flexerril. I think the flexerril makes me feel to out of it, I do not like to take it & can only take 1/2. I just don't want to ask for it, because the doctors have such issues. The rehab doc had me try it but as I said I never really took it much. I had abetter day that day & went longer between doses of perc. So I know it relaxed the muscles. The MRI itself was torture. Hurt to lay that flat for so long. The perc. makes the bladder alittle weaker so really had to go. Just made it out of the thing in time. Mornings I swear I go every 30 minutes.
The surgeon won't be in till monday, so I will have to wait for the test results. I felt the best that morning of the MRI. I swear every time I go for one I feel better. I always worry that its not acting up so nothing will show. I am sore after. I told my sister in law that is the strangest thing. May be because of the valium. Same thing when I went for the spine, it was the best day I had for over a month. Perhaps that is why the pt does not trust them.
I think I will loose it if nothing shows. I am sick of it all. All the throbbing in those ribs & muscle spasms, especially in the chest makes me feel like I am having a dang heartattack. Keep your fingers crossed for me. Talk to you soon. Sammy
now didn't i TELL ya that valium would help?? i ALWAYS do this before now and the pain med thing too. its just way too painful to lie still for me let alone have things just hurting during the process. hopefully something will show. just becasue some area is not 'actively' making you go insane from the pain that particular day,does NOT mean that it will not show itself on MRI. if the problem is actually there,it would most likely show itself. you GOTTA take it easy sammy,really. just listen to your body hon.
i feel right now like i have alot of inflammation within that actual joint capsule. it almost feels like crampy like? if i could move it right that it would 'pop' and things would feel better? but this is starting to actually radiate around to both the back and the front off the chest wall now. i see my PT guy on friday and boy am i looking forward to that. i HAVE TO have him do some cranio and try and release my diaphram in the top area(you actually do have a lower abdominal and upper one,didn;t know that til i started the cranio)? that right kidney is just ******* off everything there and the diaphram gets all tight on me and restricts my intake when i breathe. thats just from constant irritation cuz my right kidney now sits right under my ribcage in the FRONT now? not the back. its just huge sammy,but all my kidney labs as of feb were still within all normal ranges. thats huge believe me. if you could see my kidneys upon ultrasound,you would never believe that cystic mess could actually produce perfec labs. this is just the nature of PKD. very insane condition.
my particular RSD in my right knee was actually triggered by the spinal cord damage that also included(and they never mentioned that this could actually even happen tho i was told about the other crap that would defintiely be there)a damaged sympathetic nervous system right at the cord levl. among other things,i have damaged cortico and spinothalamic tracts,two leg nerves,one came back on the monitor during the surgery damaged and the other,not at all. a huge hit also occured to the ulnar andmedian nerves within my left lower arm and hand which caused theloss of 8 fine motor muscles. but i couldn;t use my left leg or hand when i ended up in the rehab hosp about two and a half weeks post op from the u of MN.
i just started having all kinds of really insane off the wall types of symptoms and the central pain syndrome which was caused like immediately when they hit a certain part of that thalamic tract was actually there waiting for me post op as soon as i woke up,it felt like someone had actually burned my skin over both shoulder blades and a portion of my mid left arm. that was my biggest pain issue then post op,out a coupe weeks.immediate post op i cannot even remeber half of since they had to sedate me just to be able to tolerate the pain. trust me,your spinal cord does NOT like being cut into at all.,besides the muscle hell caused by them actually cutting thru all thse large muscles back there to just get to my sord. it was a huge wadded up mess for soo long. but about nov 4th(my actual surgery was on sept 22 just weeks before this occured)i felt the very first ever pain in my right knee one day just watchin the vikings game. it hit out of nowhere and started to burn like heck. it got much worse over the next hour and i had no clue as to why. then,within days,the swelling started,i also had felt a lump behind my knee which turned out to be a bakers cyst that formed becasue i cannot feel part of that right side from the injury on down?i somehow tore the synovial sac and thus the bakers started. i have a condition called brown sequard syndrome(look it up,it will make much more sense then) where i just cannot feel the difference between hot or cold or even feel the pain of a needle being stuck like into the most sensitive areas like the stomach? tho i retain full sensation in that area,i just cannot feel those three things. its really crazy trying to actually explain this to people since i can feel very fine touch,just not those three things since they are governed by my damaged thalamic tract. insane really.
so over the course of time and me finally being referred to my wonderful current ortho surgeon,we did deduce that i am suffering from RSD in that right knee on down thru my foot. but it all started with the actual SNS damage. thats all it takes sammy. that has been what i have been concerned about for you since alot of your particular odder type symptoms do fit the syndrome. if you do not have actual RSD then i do still really feel that at least some of your symptoms DO have to be coming from some level of SNS affectation somehow. the only true way to really tell is with that stellate i told you about. its very straight forward actually. if they KNOW they actually hit that stellate during the injection(it IS guided with flouro and there are other ways to actually tell too) and you do not feel ANY sort of relief from your pain what so ever,then it is not likely that the SNS is actually being involved. BUT if you DO feel ANY relief of anything there,it would be considered to be some level of sns genrated type pain. like i said,pretty simple ya know? this is the one thing you really do need to obatin yet,you just need to know for certain. if it is,the sooner treatemnt is actually started the better the outcome and even a possbile remission of your pain and synptoms. so you do have to have this either ruled in or out at some point hon,you just have some of those particular symptoms.ever since you mentioned that sweating way back when i have just had this ongoing feeling that there IS indeed at least some level of affectation going on since the sns governs sweating. we will just have to see.
oh,by the by, my 'puppy' is actually great dane and english mastiff mix and huge as heck right now(i am going to buy a saddle soon). just got his shots and a weigh in yesterday and believe it or not,this 20WEEK old puppy went from 36lbs about six weeks ago to a whopping 73 right now. this is a flippin PUPPY! now you know why that back of shoulder hit or any of the hits my knee has gotten have been a bit over much. hes just one huge doofus ya know? great disposistion tho and loves other doggys. we just need to get out of teething and the "i have all the energy of a power plant" stage.
well i do hope something shows up that can explain what the underlying issues are with that shoulder/rib area hon. now we wait. that always sucks. obtain your own copy of those reaults hon. let me know anything you find out sammy. hang in there hon,and QUIT doing work or i will track you down and make my doggy sit on your legs. believe me, you wont move,lol. why should i have all the fun? marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
It really does take a long time for the inflamation to go down. I just plan on icing my shoulder at least once a day. My shoulder continues to "cramp" up with some movements and at random times for no apparent reason. When this happens, it takes a while to loosen up. My PT and doc both said I should continue with the ice for the forseeable future. I have also been using one of those cloth covered tubes of rice that you stick in the microwave and heat up. The heat helps loosen the muscles sometimes. Kind of like what they use at PT. May be a combination of physical and mental, but if I helps, I will continue to use it.
I have been having alot of popping in my shoulder. It is especially bad on my movements out to the side. During PT, the jobes out to the side not only hurt some, but my shoulder pops every time I move my arm down. My PT said it was normal because of the inflamation that is still there.
I am on a completely different healing schedule than both of you, but I can tell you there is hope as the decompression heals. I get the feeling from my Orthopedic Surgeon and my PT doc that I am a bit ahead of schedule in my healing. Already, my shoulder is in less pain than it was last fall when I was in serious pain (or for the last 15 months for that matter). The last several days I have had alot of intense aching, but that is more from use. I am not getting as much of the intense shooting pain. This week I started having much more range of movement. I met a huge milestone in my healing, got all excited at PT over such a little thing. I was able to get my hand behind my back for the first time in many months. Granted, I can't get it very high yet, but I know it is coming. It will be a day to celebrate when I can fasten a bra strap in back. (One of those little things you take for granted until you can't do it.) I am also lifting 2-3 lb weights for many of my exercises. I couldn't even lift 1 last month. My biggest danger now is just overdoing it. They did say I couldn't really hurt it though, just make it hurt.
I really do with you both well as you go through your healing processes.
thanks for the info MR,really. it does help to know that we are not the only ones. just exactly what did you have done and how long ago agian? you may have mentioned it but my mind isn;t where it should be these days ya know?
so,your PT says that everything that you are feeling IS normal then? thats what scares me since i have had a couple surgeries that just didn't fuse or heal right. thats my biggest fear right there. you should do what i do with the bra thing? snap it in the front then slide it around and slip it on from the front? i finally was able to wear one(this actually gave me breasts again,lol)about a little over a month ago as long as the straps were not tight. i just really really wanted some semblance of a chest back ya know?
according to what my ortho told me at our last visit about probably one month ago(i see him again on the 20th) he said around the 1rst of may i could start working with those band thingys? i couldn't get into my PT last week for alot of reasons but see him again fri so we will see what he has planned for me,scarey.
besides that crampy feeling in that joint i also have an area right below and kind of into the armpit area in my upper arm? this is just a really sore area,really sore. this was the spot where i felt pain during my half awake surgery? just woke me right up from my drug indiced happy place right then and there when he started working in it. he cannot explain it either but that spot was exactly where he was at when i woke up goin owe owe owe. the anesthesiologist just hit me again with something and i was back out like a light again. very odd tho. its just very insane to actually feel anything where i actually did after having a full scalene block done. i AM a freak,believe me.
i am wondering where sammy is. i really want to know what the deal is with that hypermobile ribcage thing she has goin there. could just be imense swelling and inflammation too thats just pushing out there.
i am glad you popped in MR,really. its good to compare notes with others. it gives you a bit of a better idea what IS and is not normal too ya know? i do hope things continue on the upswing for ya. i DO know how great those tiny little milestones feel when you hit them,trust me. please keep us posted hon,and good luck with the bra,lol. marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Montain, When was your surgery? Listen I had mine Jan,31, helped to lift a genteman the other day, my shoulder is now killing me, so take it from me be careful.It hurts to move it at all. Really hurts. There is triple the pain now. When I was in pt my shoulder started to click or alittle pop at times, this pt said that is not good. Said I was probably over doing it & she was right. Icing always helped along with rest. I had more pain free ROM after surgery to, but I still can't lift my arm painfree over my head or put it behind me but my recovery is halted due to the other problems.
Marcia, my gosh you don't have a dog, you have a horse. Did it come with a saddle? He will definantly out with you in a few months, you better get those bumpers.
My surgeon will not be in til monday, I dropped off the cd from the MRI.
Had my first osteo appointment. Very interesting. Learned alot. She said my pelvic and hip area are a mess & there is facsia that run from there up through the ribs & the back area. Interesting she is saying they will rule out areas as they go along. Made me realize that it could be coming from an entire different area then where all the actual pain is. Now she also mentioned your Lidoderm patches, which I told her I tried, now she has prescribed a compound cream to try with the lidoderm in it, she said she can requests it different strengths if it gives me any relief.
I thought of you right away. Every heard of anything like that? I will get it filled today & give it a try. I wrote down the name of the compound if you want it. Super nice doc. She would not go to near the ribs, said I am to sensitive & did not want to trigger it off. But did say it is all super tight in there & the hip area.
I have screwed up the shoulder. Bad, right in that back scapula, feels like right after surgery, woke up in tears. My husband seems to think it may be in one of the areas he worked on & asked me what the heck was I thinking! I am going to be icing like crazy.
I am having additional help come in at work, thank god. I will try to only kind of supervise & mostly from home. I just can't get a break, suppose to be back off work til june. Can't just leave people to get hurt or sick. Dang every time I am off work one of them go down hill. Just don't get it. I have told them to allow the extra help in for know, that I have to heal. Get this had a nurse come in & she messed up the meds for one & could not find a med that was right in front of her face, not kidding. No wonder they want me there. My clients glucose is out of control, stopped taking care of himself because I was not there. So have to start all over again, goes from 400 down to 40. That is an example of why I can't stay put. Got some help & getting more, but the guy only listens good to me. I don't get it. They have kind of adopted me & I have to be a bossy bit of baggage to get him to listen, but no more lifitng at all. I should have it kind of straightend out somewhat by the end of the week. Stressful, my sister inlaw said no wonder you can't heal, said she would not do my job for anything at all.
Man just hearing you describe what is going on makes me hurt. Don't let that chest area get bad. You experiance the same as I , where you can't get a deep breathe in because of something interferring with the ribs. For you its the kidney, for me thus far, its because the ribs are pushing upwards. Really is tough. Can get scary, can't it?
Be careful, watch that popping or clicking. The osteo doc. said no more heat just ice. I will ask her why. As we progress & I get to know abit more about the shape of my body I will mention the stellate(spelled wrong?) injection if nothing is improving. The hand is sweating again, I think its because of the arm being in pain & back in the sling more.
I am glad she is pointing out why I have pain in certain areas. She said the pelvis & hip are bad, that accounts for the hip pain & leg probably. They do not like meds, so I will need the surgeon to do that. She did say take a pain med if I need to before I come, which will be once a week so far, & to call if it gets out of control. This place takes months to get into but I really like the way she explains everything, uses alot of med. term, I told her I am going to have to get my MA books out & I wish I would have paid more attention to those chapters (ha). She said she does tend to forget alot of people don't understand what she is saying but I do at least somewhat, she said ask all the questions I want, that is new for a doctor. We will see how it goes.
I expained to her that my only worry was having to drive there, some days I am to darn sore. EVeryone works so cant always get a ride. My sisterinlaw came 30 minutes to take me there & for my MRI, gas is to high to ask her to do it on a regular basis (even though I pay her for gas)& she works out of her home.
I really feel stupid, can't believe I screwed with that shoulder. All the dang people standing there & I am by far the smallest & no one stepped forward to help him. No more, after experiancing this pain again, I am done. Even the pain med is not working well. I pray something shows in that MRI, I am getting to the point I can't stand not knowing what is going on. Talk to you soon, Sammy
sounds like that new doc is good hon. i too have an overly tight lower diaphram,which is an actual thing,didn;t know that til my very knowledgable PT guy explained that you do have two seperate ones within just the upper torso area. that fascia IS something to be reccond with,believe me. my PT just knows when things are too tight in me, my high overall "tone" doesn't help that at all. she appears to know what shes doing sammy if she actually left that rib area alone. the most likely reason she wants you to use ice vs heat is the inflammation issue going on. that in and of itself creates alot of excess bloodflow to the already bad areas(throbbing??),and heat would double that,but ice would do the opposite,ya know what i mean? i know ice works much better for me than heat does right now too. usually you go with what actually works/feels best. your body kind of 'knows' what its needs are to a certain extent and will let you know when you are using the wrong method. the thing is,in almost every case,you will not actually hurt something by trying ice but you can create a host of issues when using heat. its just the overall effects heat has on the body and the vessels. good rule of thumb here? when in doubt,ICE.
i see my PT today,kind of wondering whats going to occur there since my ortho did sign off to let me start with those band thingys at my last appt. but things are still not too good yet. i too still cannot get my arm above my head without pain either hon. its just that joint itself that at least in me right now,is feeling pain/sore? and also that like "cramp" that wont go away for me. i also have the wierdest looking muscle strip of atrophy that i cannot even begin to try and figure out(it runs from the chest wall to that bad into in my upper arm towards the front but under the armpit area?). but it is attached somehow to the area i felt pain in during my surgey? very very odd. even my very highly experienced ortho said he has never ever had that happen in the spot where i felt my pain. this man has probably done like at least a thousand of these types of suregrys using the full scalene block and is completely stumped. i AM such a freak sammy,really.
find out just what is in that compund if you can,K? i have heard of some really good ones that i have thought about trying. i know shore mentioned one with lido and ketamine and a few other good things in it. have been wondering if it may help mostly with my RSD knee. but that knee does not respond well to any numbing affect done on it or to it for some reason. it appears to raise up this RLS type of component i just have in that knee area. don;t know why,it just brings it out there.
one huge thing you just have to do for yourself hon despite its going to be hard?let your patients,at least to a certain degree go sweetie. believe me,doing the work i used to do just for others really was hard to have to give up after my spinal cord surgery. honestly sammy,this is what i grieved the most of all the losses. BUT YOU come first right now ya know? but believe me,i DO totally understand why you think what you think and are feeling it. i have been there too. but something has to go here or you will continue to keep accidently doing something that is going to keep repeating itself and your actual progress will suffer for it,it already has. you keep setting yourself back for every gain you make hon. this just cannot continue ya know? this IS in your best interest right now or you wont even be able to get back to those people you care so much about. its the trade off thing. you just do what YOU need to do now in order to get back where you need to or want to be again. you can monitor,but please don;t EVEN go there hon or something will occur agin for you. you just care TOO much about these people and are sacrificing your own health to take care of others. while noble,its not helping YOU right now ya know? we are both very much alike when it comes to basic caring and compassion for others. BUT there is that limit you just HAVE to follow ya know? i literally placed my life in danger an average of about two to three times oer month over the course of just doing many runs and FF/medic calls(we were a VERY busy on call FD) and MY body paid that price with wear and tear and just doing things that i had to do on a quick second without even thinking about what i was actually doing to myself. the adreniline just kicks and you don't FEEL what you did til it dissapates after its all said and done. that job just trashed my little body. but i wouldn;t have traded it for the world either . its the price i paid for doing something i really loved and cared deeply about. when someone is hanging outside their car with that car hanging upside down in a tree with the only thing holding that person in is their seatbelt,well you don;t always really 'think' about what you are doing or did til its all over and your patient is packaged and ready for transport. THEN it hits you. geez, i coulda died or mangled myself pretty badly. duh? but then again,thats what i signed on for too.
you just have to start thinking with your head and not your heart hon or things will continue to just 'happen' to you and YOU will continue to pay this very heavy price. you will not be able to actually return to that job you love so much til your body says so. the better you do now,the sooner that will happen ya know? i am sorry if i came across as a bit** but honey,i am worried about you thats all. just work on taking care of number one for a while, it WILL pay off in the end. until you let your body properly heal and get all the right stuff done,there will be no job to go back to. this is where you are at sammy. i do not want to happen to you what happened to me,thats all. having to be forced to give up something that you truely love doing that gives you that sense of purpose and just feeling valued,is absolutely gut wrenching sammy. it just is. just keep your distance and do not allow yourself to get into another situation where you place your body in any compromising posistions again,K????i want a promise from you sweetie.
okay,i am off my box now. i really want to hear that you are just getting better sammy. just do whatever you have to right now in order to get back where you want and need to be. let me know what you find out as soon as you hear it,K? i care ALOT about you hon and only want whats best. your friend,marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Bless you Marcia, you are such a good friend. I'll tell you, you understand more then any friend I have around me.
You are a mess! Don't take that the wrong way, but you are. It sounds painful just reading it. I asked the pharmacist where I picked up the cream about you. I asked him if you could not take antiflammatories orally could you possably take them topically & he said he has alot of customers with that problem, so they use the topical creams. Real smart guy, not your average pharmacist or pharmacy, more of some type of actual special chemist. The cream is the Keto-Lido gel & can be made in different strengths. It takes several days to a week for the Keto. to work to its full potential but of course as you know the Lido works right away. He said its great stuff & he makes & sells alot of it. Of course its not the cheapest & I have to see if my insurance will reiburse me, but really for a smaller area the price is not bad. Not a whole lot of places make it around me, he was thrilled to learn about the Osteo doc. & was contacting her to let her know about his location. She only knows of the one place & that is a distance from me. I really think you should ask you doctor about it, hey it would be worth a shot. I will know if it works in a few days. He said it may have to be made in a stronger strength for me. Sounds like you would need a pretty strong dose. The Lido patches work well for you so what would you have to loose by giving this a try?
The guy is full of knowledge, picked up some flax seed oil & calcium, while I was there. We were talking about tumeric, the spice, I have read alot about it being a great anti
inflammatory & he said indeed it is, he also said the flaxseed is great. It was made right there. I bought the capsules. Now I just have to take them.
I know I have to get off work, that should be happening next week, I will go in probably one day aweek to check on things but no physical work. Funny how the adreniline does indeed work, you would not believe the people who ask me how the heck for my size I lift people so much bigger, 5'1, & around 106, but that is exactly what it is adreniline. I got my lecture form my husband friends parents yesturday, no more lifting or I will just never get better. Tired of being in pain. I do believe the binder helps.
Your body is weird, I'll bet you had the surgeon scratching his head, & telling all his ortho. buddies. Alittle on the scarey side for you I bet.
I am looking forward to actually getting some down time, boy do I need it, & tired of the stress involved with my job. I am always the bad guy you know, the one who has to make everyone do what they are suppose to do, always lecturing. even at home I am the bad guy, I swear my husband hides from dealing with the girls & I am not joking.
My calf keeps getting that burning sensation in it, that is drivng me crazy. especially in the morning before getting out of bed. weird.
I have the next osteo appointment tues. I am curious to see what she will discover next. I hope this helps with my monthly cycle pain, let me tell you that is almost as bad as the other pain & it puts me in agony with the ribs. I am going to ask her if that may be connected to the pelvic problem, sure sounds like it could be. At this rate I wont mind menopause so much.
For our sizes we both chose the wrong careers I think. Maybe we should have been accountants or something, that would drive me crazy.
My Pt called & left me a message, have to stop by, she made some notes for me to take to the osteo & wants me stop in to see how I am. She is a great pt. Then again I am a puzzle & people like to solve puzzles. Puzzle is better term then freak, but hey I do not want you to ever feel alone so I can be a freak to. I'll just bet there are alot of "freaks out there". Sad, we are led to believe science has the human body all figured out, far from it. We should be on Medical Mysteries.
I'll tell you I am tempted to ask that chemist/phamacist guy out to dinner just to pick his brain. Maybe I'll see if they are hiring. I worked in a pharmacy once, but that was a century ago. I do think a career change will have to happen in the future.
I will put this Ketomofen/Lidocaine on the PM board lets see what we can discover.
It is to bad we can't swap info. I would love to have you come for a visit, it does get lonely being a "freak". Thank you for being my rock. I need it more then you know. Sammy
your my rock too hon. we both need an anchor here to help and we seem to be doing a good job with that. thank god for these boards huh? at first when you mentioned keto i was thinking of that stuff that shore talked about,but that actually has ketamine in it? this is very strong stuff ment to help with RSD type of pain. but there are a few other things in it too. i recently,over the net,purchased something called iburelief?(its a topical you rub in),but have been kind of afraid to try it only becasue i am not supposed to take any NSAIDS along with my baby asa. i know it would be absorbed into the skin and then into my bloodstream,you know what i mean? the thing is,i do have a vasomotor malfunction in both legs from the sp cord injury crap that appears to be causeing what i am wondering may possibly be the beginnings of a DVT. the vein is much larger than any other i have and has that "ropey" type of look too? but i now have an ache in that leg now that wasn't there before. i am about due for my kidney/liver US an i think maybe i should also have those leg veins checked out at the same time. that doppler tool they use can really show bloodflow sooo well. this was the one test that really showed my sons blocked portal vein that day he puked up blood at school that day back in 99? what a flippin day from hell that was. i found out when half of the rad dept is asked to walk in and "give it a try'(didn;t know what in the heck they were "trying") to find something upon US,thats not a good thing. he had absolutely NO real bloodflow going thru a normally pretty wide open P vein in the liver. but i digress.
i am glad you have decided to just stay away from anything that 'could' possibly get in the way of you recovering hon. sometimes we just HAVE to let go of something when we know its in our own best interest. there have just been way too many set backs for you in just trying to do a job you just simply are not prepared for yet. have you heard ANYTHING about that MRI yet? what did your surgeon say about when he wants to see you to discuss the results? you can get your own copy from them yourself ya know? just stop in and sign that release and its a done deal. that would be the absolute quickest way for you to actually obtain your results. of course you still need to meet with your surgeon about them,but it could give you at least some idea here.
ya know,i was reading thru some stuff on the net trying to just find out what exact muscle it is that i have that is very obviously atropied and came across alot of info on the serratus(or 'serrati") muscles(i was looking at your back area issues too just for fun)? in your case,this one area if affected could explain some of your issues. this particular muscle is responsible for your breathing(respiratory muscles)one muscle actually ELEVATES the ribs,while the lower actually pulls the ribs back in backwards and downwards. now this is in my own words but taken from this research: it also "fixes' the lower ribs,thus aiding the downward pull,or action of the diaphram which helps in resisting that tendency which it has to actually draw the lower ribs upward and FORWARD. sound familiar? look up some info on the serratus sammy. it could explain some things that are happening with your ribs. i saw this and just went,wow, that could explain sammys problem ya know? these two muscles,i think one is the major and one is the minor,are indeed part of the back area of attachment to the rotator cuff. there IS a definite connection there so it is worth at least exploring a bit more for your issues. just something i found along the way.
saw my PT yesterday and he said my ROM is much better tho the pain he said was normal. thats all i wanted to know,right there,that this IS normal. i have had so many surgeries not go the way they were supposed to that when i am feeling like this this far out from my actual surgery,it makes me a bit apprehensive. i hear 'noises' in there but he said that too is normal. i do really trust him or believe me, i could never just relax my upper body and give it over to him. that part is very hard for me to do since i tend to tighten up and just guard it. so thats kind of a biggie for me to be able to do with anyone really. he released my upper diaphram for me sammy,wow,i could immediately take in and let out "normal" breathes for the very first time in weeks. this myo and cranio is just truely amazing stuff hon,truely amazing. i am hoping since you are seeing an osteo that they will be eventually doing this with you too. it really does help to releieve that over tightened feeling up there.
alot of things are just much less intense right now up in my neck,base of skull and upper back right now just from that one visit. i LOVE this guy. i know just based upon what that sling did and this surgery in general that you HAVE to be having that very same overtightened feeling up there that believe me,just adds fuel to the already existing fire for you too. if you can get this person to just even start light myo on you,you would benefit from it,trust me. after trying many many different types of therepy for my neck and upper back mess,this really IS the ONLY thing that has actually given me true solid lasting results. its been a very long road for me with this existing mess. i would at the very least,ask this osteo about these two therepies and see what she says. i am sure she must know how to do this stuff too since it is considered and osteopathic type of therpy. this WOULD help you hon.
well,please let me know as soon as you hear anything about the MRI,K? i am just dying to know too. til the morrow my freaky friend,marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Wow Marcia, Get that vein looked into. your little body does not need anything else going on in there, I am getting abit worried about you.
Do you do that to? Where the therapist is telling you to just relax & you just cant seem to do, out of fear or what ever. Can you blame us?
The MRI will be read this week at some point. I am more fearful as I said nothing will show. I am going to get a book just to keep track of everything you tell me I swear if you did not bring these things up I would not even know they exist. This Osteo Doc. really talks all the way through the treatment step by step of what she is doing so I will have to really listen & make some notes. It did sound like she would be doing some fascial therapy but I will indeed be asking as we go along. I already mentioned to her I like the way she explains what is taking place & what she finds. Thank god I have a tiny bit of understanding or I would think I was in another country.
That muscle does sound pretty interesting, I will look it up & mention it to the osteo doc.
She did make a good point in letting me know the problem could be coming from an area never considered & perhaps that is why I have remained a mystery. Funny how all these doctors look at things differently. Right away she did tell the receptionist to book more appointments for me & to have me call if I needed to get in sooner, so what does that tell you? I am abit of a mess.
Lets face it we should have been accountants & been bored but safe. If I have to sit & deal with numbers all day I would probably have a drinking problem (ha).
The anti inflammatory gel/cream is Ketomofen, ask your doc. about it. It would be great if you could give it a try, especially because it is mixed with the Lidocaine & that works so well for you. You will never know if you don't ask. Remember I asked this chemist & he said alot of people use this because they can't take the oral anti's. Of course we know it must in some way get into the blood stream but be worth asking at least. It would be nice to have you come on & say I found something that works great. After talking to this guy I realized there are probably alot of things out there that we don't even know exist. How about giving the Tumeric a try? I am sure it would take abit of time to see if you feel a differance but at least its natural. I plan on looking for a good brand. They did not have it there, it was combined with herbs & I know enough to watch when you get into the herbs. Consider some of the natural alternatives, they should be pretty safe, Tumeric as far as I know is just a spice. I have read abit about it & asked around. I figure if you read or hear about something from several different sources there is probably something to it. Most phamacists don't talk about it, lets face it they would be loosing some money, same for your doctors, but alot of other countrys use these methods for treating conditions. At least we would not be putting all that poisen in our systems. My problem is I don't stick to anything, but this time I plan on to.
You really have a hard road to go at times, I must say I admire the way you deal with it. One day at time is the way I look at it for now. I have a dinner to attend today, I will be sitting with the seniors, that way I will feel abit more at home. How sad, I have got to get a life. I have started abit of gardening & my flowers. That I won't give up. I look so forward to it. I just rely on my husband help more & cut back on the amount I plant. It is the one thing I still look forward to. I just keep the binder on & do abit at a time, the binder does seen to cut back on the throbbing. So at least it gives me some relief. It feels better with it on for the most part. I am looking forward to being home more this week, I am going to spend some time just relaxing.
I am curious what does your BP run? I am pretty low unless I am in pain or on meds. My pulse it always on the high side. Amazing at times what pain & meds can do to our bodies. I wll look up that muscle when I get a chance. Osteo appointment tues. & I will wait to see if the surgeon calls, if I do not hear from him by wed. I will put a call in. The office said he will be behind & I will receive my films back. That I will make sure of. By the way if I use that shoulder alot I can hear some stuff going on in there to, so perhaps its normal, my pt told me watch that "clicking noise" she said that may not be good. I still can't get that arm up without pain, how about you? that does have me concerned because I am not getting any pt on it at this time. You know your own body so just be careful.
Talk to you soon. Take care my friend, Sammy
Marcia, you surgeon called with the MRI results. Good news & bad. He said the MRI was to look for tumors, lesions & so forth, in which everything is normal there. He is convinced that I am having myofascial problems big time & said it is one of the hardest things for any doctor to treat. He acknowlegded that it is an extremely painful condition & will be a very slow process & is happy I am into the osteo, said we will have to take it one step at a time. I am guessing you would know about this. Considering my pain level is at an 7-8 all day, I am miserable. Got off the phone & burst into tears, knowing chances are I am going to be in pain for along time to come. I just can't seem to get any relief today at all & it is excruciating. He said to stick with the treatment, that this has been existing for along time & it will take some time to get better. What do you think? Anything else they can do for the fascia or muscles? This is so hard. Would any type of injections work. I am willing to pretty much try anything. I am a mess here. Whole area hurts along with the shoulder, taking it easy & icing away. Just can't get relief. Thought you might have some opinions on this & will be speaking to the osteo tommorrow. Am going to bring up the myo fascial release. Something has to be done & soon. Let me know what you think. Sammy
Getting abit worried about you? Everything ok? Hope all is well, will keep checking.
well at least you know something more than you did before,and that IS something. the thing about the fascia is it can casue soo many different problems in other places besides just an inflammed area since it is all interconnected ya know? honestly sammy.,i do think you are probably right where you need to be right now,really. it does sound like this new doc knows her stuff too. it IS a slow process,at least thats what i keep hearing on my end too. and yes,i still have sometimes really bad pain whenever i go up with that arm. it all depends upon just what i am doing or trying to do. i even asked my PT last fri if this ia all "normal' and he once again said yes.
but starting at least very light myofascial release at this point sammy really would benefit you probably in the very best ways considering you do have the fascia issues. i kind of figured that out before hand. it just would go along with the surgery and all the other crap we have had to deal with. sooo many people have upper neck/back pain and really have no clue as to why. it is,in most cases,trigger points which irritate the living hell out of that fascia and cause it to start contracting and inflamming things all on its own. i have learned TONS about these areas along with getting that cranio therepy too. it all comes together there in some ways. everything appears to really play lot off each other inside our bodies where one even small thing can become a major issue just becasue of the way our bodies respond to any level of trauma and the resulting inflammatory responses. espescially to the CNS. i just think this woman right now is your very best bet in really gaining anything solid in results.
i have just been feeling such huge differences in my pain and the overall tightness up there since i went back to my PT guy. but for every step forward we do end up going a few steps back too. he said this too is normal. i am just trying to use the lido and bio and doing my excercises even on the days they just really hurt like hell. i asked him about that(i wasn't sure if i was actually causeing more damage or this was normal) and he said i need to be doing at least something when that pain goes up. it is expected that it would cause me more pain til things calm down in there and just get more back to the norm. which in both of our cases,i think is going to take a while too. this was just my already worst area even before the dang surgery and you are dealing with other issues too. i just really do think you are in the place you really need to be right now.
she sounds alot like my PT person. the osteo will try alot of more off the wall types of therepys on you since that is what osteos do. they have a different take on the body and how it moves(down to the actual dura that surrounds the CNS and how its flow can affect our central nervous systems) than most docs do. my PT is very heavy into the more osteopathic types of therepy. it has helped more than any other therpy tho so he must know something right?
make darn sure to obtain your own copy of that report just so you have it. it should be interesting to see how this all plays out since there were no actual hard findings there. but i would speak with your osteo about the serratus muscles. honestly sammy,when i read that i just automatically thought of your ribs. this is that area where i told you there had to be an area of attachment back there? it would appear that the serratus is that area,or at least one big contributor. cannot remember just exactly where it actually attaches but it IS part of the rotator area. i was reading thru what i had looked up on rotator cuff 'muscles" i think? thats where this came up. so there IS most definitely a connection there.
i will have to ask my doc about trying any of the ibu type of topicals. like i told you,i did buy some sort of cream stuff but have been afraid to use it just becasue of the blood level stuff having to do with clotting issues and being on asa. why does life have to be so difficult? i am always willing to try just about anything to at least give it a shot before i discount it. i mean geez,if i had never tried the bio,where the hell would i be right now ya know? we just keep plugging along like little energizer bunnies,getting thru it all one step at a time. sometimes thats all you can do,or your body will actually let you. but we keep going anyways. thats half the battle hon,believe me. for me, i know things will never be "normal" again,that was already a done deal as soon as my NS cut into my cord,but i was getting a much better quality of life til this all started. you just deal with it and get thru it and hopefully come out the other side a better more knowledgable person with a whole new perspective on things that you never had before. its just a real humbling exprience to go thru when you hit the spot you are in right now. you DO actually gain something from every crappy experience tho sammy. really. every crappy nasty scarey thing i have had to deal with has also created growth in me and made me a better person for my trouble. for every 'bad' there is a 'good' trust me. sometimes its kind of hard to see but you do gain from surviving thru the bad crap. i call it gods pay off to me for making me suffer. i also have gained way more knowledge of things i never really wanted to know but that alone has allowed me to help other people. so thats a big plus. having to resign my posistion on the FD just about killed me, since nothing else could possibly give me that same feeling of what a great job i just did for someone,you know what i mean? but being here on these boards has helped ease that for me in some ways,just not doing it quite the same way as before. its an adjustment.
i have lots of hope for you sammy that things will eventually right themselves with the right people involved inyour ongoing care. i really do think you are with probably the best possible person right now for what you need the most,and thats huge right there hon. have you asked her about the possible SNS involvement at all? you still do need that ruled out or in too. you just need to know for certain what is or is not an actual pain trigger or generator.
just keep a hangin in there hon. this too shall pass. it just may take awhile. i am hangin too so at least your not alone here. Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Marcia, glad to hear from you. I am so sorry your recovery is not going abit better.
I am taking a total step backward, the shoulder is really suffering because of the rest, hurts like mad if I go to lift it. What a mess.
The osteo does use a small amount of myofascial release along with alot of other methods. She believes there is definantly alot of fascia problems, & said it is pretty bad & of course is chronic because it was not dealt with long ago. Dang bad day yesturday, pain level 7-8 all day then the surgeons call. I really spent the day having a big pity party.
When I got into the osteo's today she noticed right away that my left side of the chest was as she called it puffy, I call it swollen. All in the back of the thoracic area was super tight. She has been going really easy with me because I am so inflammed & I swear she keeps saying how petite I am, says I am so small she was leery of prescribing a stronger compound cream becuase theres not alot of fat or muscle, but she did write a script to try a stronger dose, she said she may call the pharmacist & ask his opinion. As of next week she is going to as she says go full force with the treatment. My arm/shoulder were sore today after so I will have to watch that.
I got to tell you I am not doing to well with that dx. I know there is alot of damage & wonder if I will ever get back to what I use to be. Especailly after talking to the surgeon & the ostoes opinion today. I know how you must of felt give up your job. It is like giving up a huge part of your independence & that is the hardest thing for me. I have nine weeks of help at work so I hope in nine weeks at least I have enough improvement to do something, I know I am done with any real physical work. Heck I don't even want to risk it. It is just not worth it at all.
I told her I would be doing abit of research & asking questions so there for I will be coming in with questions to ask her. I can't go on with all these muscle spasms I'll tell you that. Heck at this rate I am not even sure who is treating me, This doctor does not believe in really prescribing meds & the surgeon Is temperary, not sure how to approach this & I am tired of feeling like I am hanging in limbo, you know. It really is crazy.
I am glad your therapist has a positve view on the osteo treatment. You are really lucky to have him, not that I have to tell you that. I am still kind of running interferance at work & my husband says if the stress does not cut down he does not not wanting me even doing that. I am trying to just leave it alone as much as I can. I'll tell you this is one heck of a mess & I can't imagine what you went through. You have alot more going on then I do & You have got to be one strong lady. Me, I feel like I am going to loose it at any given moment, to much to handle, if I knew I had the PM covered then I feel I would at least not so darn worried. I told my husband if it gets any worse I may have to see a physc. next. He freaked alittle at that. I am glad to hear from you, I got to say you are so right if it was not for these boards I would be insane by now. Whats up with that vein problem? Are you going to get it looked into? Talk to you soon, Sammy
ps. I am indeed asking for a copy of that report, I have discovered findings in reports that have never been mentioned to me at all, but the findings are definantly things I should have been made aware of. I will put that muscle down to ask about, I am starting that journal I mentioned "questions Marcia wants me to ask & other things I would never think of with out her" (ha)
Marcia my friend I do believe you are on to something with that Serraus muscle. Did some research & let me tell you to many things match & I mean things that had the rehab scratching his head. It mentions the winged scapula, which two pts confirmed I have, problems lifitng the arm above the head, chest pain along with ribs, but most telling is in one of the sites it mentions pain going up along the brachail plexus area, up front of throat, above the collar bone. Which was the reason the Rehab. sent me for an MRI of the brachial plexus. I honestly believe if not the cause it is most definantly invovled, even goes over how is appeared during breathing which once agian was noted by two pts. You are a unbelievable! Do you take Visa or mastercard (ha)? It has to be involved, to many symptoms & they are not common.
I am full of spasms after yesturdays treatment. I hope this osteo listens to me, I told her I was going to start researching this, & I will tell her my genious of a friend found this info. on the Serratus muscle. It is just to ironic. I have found nothing that has has so many symptoms that matches mine, nothing. I will keep looking into it, but I have printed out some info. to go over. I will be more then alittle upset if this gets ignored. Thank you a millions times over, lets hope we are on to something! Sammy
knowing you can find answers is my 'payment" hon,really. like i told you before,i just read that about those muscles and immediately thought of how screwed up your ribs actually are. it just 'fits' ya know? YOU popped into my mind. if this area is actually overly tight or not tight enough,it could be responsible for at least some of the problems. its a shot. but yes,do tell your osteo about this area. just keep on researching things hon,thats what i have had to do since 03 just trying to explain the 'new me". once i started reading about the spinal tracts,sooo much made sooo much more sense to me..and about the SNS involvement i have too. i would do the research then just ask my extremely wonderful knowledgeable neurosurgeon about the findings(unfortuently he up and retired on me shortly after dxing my aneurysm for me),and in most cases, i was right on the money in explaining why some insane thing was going on and what was involved. i will tell ya,the internet has been a lifesaver for me over the years.
like i said before, i really do think this woman will become your very best alli here in getting to the root of your problems,since it does appear there is just alot of muscle/fascia problems and the bone/rib thing? this is what she works with everyday ya know? sometimes we just get really lucky and get sent to the right person who really makes that difference. i don;t know where i would be without this PT guy my PMs NP referred me to for just the cranio and release stuff,really(i had absolutely no idea what this therepy really consisted of or what i was going to be subjected to but it was a shot). i would be beyond a mess with so much over tightened crap up there right now i shudder to even think about it ya know? he alone has made a huge difference in alot of things for me. just ask as many questions of this new doc as possible. you just really do need some answers to questions that no one really has been able to give you yet. i think she will be able to do that for you sammy. maybe you finally got to the perfect place you needed to be too. and like EVERYONE keeps telling us over and over,its just going to take some time. i am making progress,its just been very slow and maybe thats a good thing? who the hell knows.
the bigger thing here sammy is i have gone thru this kind of crap before and you haven't(thank god). it has been one huge learning experience for you and some for me too. its always a learning experience when we get hit with the crappy stuff. i really do think,if for nothing else,getting out of the "limbo' feeling you are in right now,getting to a good PM would do you a world of good right now,for many reasons. you just need a good 'team' of people all helping with different aspects of your condition and your pain. adding that PM right now would be the start ya know what i mean? this is what i have had to do just to try and keep track of and stay on top of all my medical crap. i see five specialists right now for various issues,but they all do one thing for me. keep me goin.
you still really do need that stellate too sweetie,you just HAVE to either rule it in or out at some point. you have way too many symptoms of SNS involvement to just say no,it isn;t there. a good PM is usually also an anesthesiologist who can do that stellate for you. i would ask your osteo about it. i am sure she knows what the ganglion injection/block is as far as it being a Dx tool. it just needs to be done sammy. you just need to start adding new members to your "team" here in order to have everything truely covered. all of these peole will be working together to just get 'you' back on track. i am sure the fears about not having your pain properly managed are playing with your head,it would be kind of expected right now in what you are dealing with. believe me, i CAN relate to that hon. just finding a good PM would help take away that loss of control feeling and give you a much better sense of direction too. just knowing you have someone in that posistion right now to handle and manage that in all the best ways really does give you peace of mind. i didn;t really have any real good PM till i arrived at the doorstep of my 'new" pm that day. just start looking,or simply call your ins co to see where they cover and who and go from there. you just really need someone who manages pain all day to really be in charge of your PM right now ya know? there could be alot of other things a PM could offer you right this minute that would be far superior to just using the percs,which have probably lost their real ability to help you anymore,am i right?(i gave up on them since they were just not really doing what i needed anymore) the right combo of meds and or therepys is what is going to get you the best possible pain relief and management overall hon. just start that ball a rollin soon.
well gotta fly here,we are having a fence put in the back to contain the freaking 'zoo' around here,god only knows when these people are going to actually show up and i look kinda scarey right now. it isn;t pretty,trust me. but DO start trying to track down a PM. you really do need this hon,the sooner the better.
as usual,keep me posted on all things sammy,K? marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Marica, I am so darn sore after yesturdays visit I am really disappointed, & I know she will be to, as she wanted to cut loose so to speak with her treatment with me. I am keeping a journal again on these appointments to see if I can piece some of it togehter. I did look up the myofascial problems & yes am very symptomatic of it. The one thing that cauught my attention about the Serr. muscle being invovled it the discomfort that can occur up the front of the neck/side of throat area. That is one symptom that I could never find listed under all the things I have looked into in the past. It had me thinking I was going alittle crazy. It really flared up in that area after yesturdays treatment & she worked on the thoracic area & the clavicle & it states these muscles are innervated by the long thoracic nerve. They mention the winged scapula (which I have) & the rib cage. Of course we will see, I have to stop & see my pt one day this week & that is the first person I am going to bring it up to, she has proven to be open minded & knowledgable, & has raised concerns about that thoracic area. So maybe its not the thoracic spine its self but something linked or involving that area, makes sense to me. Alot of it makes sense, it seems to effect all of the areas I am having problems with, so there you were right on target. If I am not mistaken it does mention it helps to support the ribcage. That would make alot of sense with my left rib cage being hypermobile. I do know this that muscle is involved, I have no doubt about it. Now I have to find out what can be done about it.
The perco. will work unless I aggravate that area. Which does not take much at all to do that. If you get a chance pick at your pts brain abit about that muscle, I would like to here some opinions. I have not forget about the SNS involvment, I have tucked it away till I need to bring it out, which may be soon, I have a feeling this osteo is going to be upset over how I am feeling today, but I did nothing else to aggravate it, in fact i laid down after & my husbund kept a good eye on what I was doing. He wants me better, I do the majority of work around here (ha). My yard looks like it never has because I can't pitch in & help. it is drivng me crazy. I do like a nice yard.
I am so very grateful to have you as a friend & I will never leave the you alone to be in the "freak club". I hope that is a pretty high fence your having put up, you don't own a dog, you own a horse & for your size you could probably ride him, infact with gas prices that might be the way to go (ha). I will do some more research & as always thank you! Sammy
I continue to be amazed by all that you are going through. Kudos for your persistence in seeking solutions to your problems. I really hope that one of these days you wake up and realize that you are gradually improving and the pain isn't as bad as it was the day before.
I had subacromial decompression about 6 weeks ago. They shaved down the bone, removed some bursa and cleaned it out a bit. Thankfully I had the surgery early enough that I didn't have any tears. I was also lucky that my bicep tendonitis had healed and I didn't need any work done on it right now. I had tendonitis and bursitis caused by a shoulder impingement that I have had pain from for about 15 months. I have lax ligaments in my shoulders and arms. (I am hyperflexible in my arms, something I never knew until the pain set in.) When I move my shoulders, my rotator cuff comes out of "socket"--kind of a mini dislocation. This results in a constant pinching of my tendons between my humerous and shoulder blade. Thus, constant inflammation. There really isn't anything other than PT that can be done for the loose ligaments. The hope is that by making more room I will have less rubbing and inflammation. The root cause will always be there though.
At this point, my pain level is low when I am not active with the shoulder. I do still get some intense cramping at times though. I do get some intense soreness and occassional shooting pain when I move my shoulder wrong, use it too much or have it in a wrong position for too long. (I had a couple 5 1/2 hour flights this week. It was sore for days after each flight. Hard to get comfortable. I even had the flight attendants fill a bag with ice for me so I could ice during the flight.) I have regained some good front and side range of movement, though not 100% there yet. Still just barely getting behind my back. It has been a disappointing week. It seems I have made little, if any progress in healing at all this week. It has hurt more this week than last. I know it will still take a lot of time, but of course I want to make constant progress. They are cutting back on the frequency of my PT sessions now. I think I have only a couple PT sessions left. It really helped going twice a week. I think the manipulation, ice and stim helped as much as the exercises.
By the way, I do exercises with no weight, some with #1-3, and only a couple with the band (green). I was using the bands frequently before the surgery. I also use the pulleys. Have you every used the T-bar during PT? Those exercises are great for working on developing the range of movement and they are fairly passive. It is a piece of equipment made with PVC pipe. It has a piece about 1 foot on the end and a piece that comes out from the middle that is about 3 feet long. They form a T shape. I place my hand on the short piece and use the long piece at different angles to gently "push" my injured arm out at certain angles. I started that on day 1 of PT. Now I am using the bar to do lightweight (basically no weight) presses and I use it to try to reach overhead--have some work still on this one.
I have a lot of tightness from my neck down to the shoulder and back of the shoulder blade now. I know it is because of the shoulder being out of wack. Last time I went to the chiro about this before surgery, it didn't really help. I had the manipulation and some of that freeze spray used then. I have thought about trying some massage, but I am afraid to let anyone near the shoulder yet. Any suggestions?
hi MR, sounds like you have been thru the mill too,sorry you have to be here with us. just had one great suggestion for you,myofascial release? have you ever tried this at all? this is what i am getting right now,tho it is much lighter than pre op was. my PT guy does the myofascial and also another therpy called craniosacral? between the two therepys that he kind of does at the same time, i was actually feeling for the first time in many years,a huge relief of that overtightened area i have up there from my spinal cord surgery cutting into all those thick muslces and a deteriorating c spine too.
just a really really helpful therepy for people with myofascial issues casued by ongoing inflammation up there. it really has done wonders for me MR.
the one thing i found out is that progress doesn;t come without pain. i was actually off the extra narcotics and feeling pretty 'stable' til i had to start the hands on PT,then everything came back like gangbusters. but what i keep hearing is this IS all to be expected and 'normal". so what do ya do but wait it out ya know? my last PT visit i too worked with a machine for about five min(i sat on this thing and just grabbed ahold of handles and kind on peddled with my arms,using my good arm to propel my bad?),then everything tightened back up in my c spine and he went over my alloted PT time just to re release the area again before i left. my c spine is just sooo hypersensitive these days and it does not take much to trigger that muscle contraction in there all over again. this is just and has been an ongoing issue with me since 03. regenerating constant trigger points. this myofascial honestly really is the only therepy that has worked at all for me. too many trigger point injections have been done i lost count a long time ago,but to no real affects. i am slowly working up to the 'bands".
i am just wondering why just having your surgeon simply tighten up those lax ligaments isn;t something he considered for that particular problem? it would just seem logical ya know? i am sure there must be some reason? honestly hon,you are lucky you had this all adressed before things really started to tear apart in there. i had no clue,nor did sammy that our damage was as bad as it was til the MRI showed it all. i think your problems would be probably twice as bad if you had actually waited longer.
i am wondering just what the "freeze" spray wa that your chiro used on you? was it biofreeze per chance? i found that stuff thru my hubbys friend and it has been a really huge part of my ongoing PM. i use the roll on stuff tho so i can really rub it into the bad areas. very helpful stuff,along with using the lidocaine patches right on the bad spots or the base of the TP that just radiate out pain all flippin day. every little bit helps.
keep us posted on how you are doing. this really is soo helpful just to see others experiences with 'healing and recovery".
hey sammy my girl. it is normal to feel like crap after a 'good' session,i do all the time after PT. it just pisses everything off agin and starts that ball a rollin(i usually take one half a valium before and the other half immediately after.it does help). its that cascade effect ya know? as long as your PT is taking it easy during your sessions i do think what you are feeling would be considered normal. espescially if she was actually working in your more inflammed areas.
i really would start asking everyone about that possible serratus being a big part of your issues,it just sooo fits what you are dealing with so dead on ya know? if this is actually a muslce that is even the least bit inflammed for some reason,it would explain one heck of alot of your symptoms. i like the fact that you are actually journaling this whole thing. sometimes it really can bring up patterns or just reading thru it about a month after you right it,it can show you that you really have made progress from where you were at,ya know? but i really do think that muscle is somehow involved here too. i would keep on this and see where it goes.
you want to hear a really pathetic "yard" story? honestly sammy, i worked for many years in a locally owned family garden center that started out in like one tiny building,then just exploded over like acres of area over the years(it is one of the biggest family owned garden centers in the state right now). this place was somewhere i LOVED to work in since during the summer and spring i worked down in the store selling and cashiering out and doing manager stuff. then in feb i would go upstairs to the 'production' area and actually help with all the plantings transplantings and seedings of everything that we were going to be selling that summer(it was a huge huge production,believe me). i loved that job and had knowledge of every single plant we sold only becasue i knew where it came from or even planted it myself. i looked forward to feb every year becasue i could get away up there and just work with the plants and really do alot of the work involved with growing. living in MN,believe me,it WAS very much looked forward to. my yard was always perfect. i mean i won little city awards for my yard and the landscaping that i always did myself,just becasue i loved to do it all. and this was a huge way for me to relieve stress.
right now,the shrubs and evergreens we pulled out two years ago in my actual FRONT yard,have not yet even been replaced. this is all become some kind of actual 'chore" for me now just having to mantain all my gardens i have in the back yard. luckily i had planted almost all perenials so they at least come back up,but everything has to be cleaned and uncovered and some is still hiding under last years leaf dump. its just really sick now ya know? its just another thing that used to really give me that sense of satisfaction and just like i said,i really great way to just forget everything and dive in for a couple of hours. now i have to do everything in like 15 min increments and that joy it once gave me is gone. getting help is not the problem,its like my actual creativitiy is gone too or the 'want' is gone? like i said,its rather pathetic. i am determined with the help of my sons girlfreind to get some things just done FINALLY but man this sucks ya know? its like everything that used to give me any real joy or sense of fullfillment that was there before the spinal cord surgery has been just taken from me. this all has impacted my already bad depression and turned it into severe recurrent depression. its just gotten that bad at times. its just learning to deal and adapt to it all. it IS very much a devistation that occurs in your life just like anything else that occurs and changes everything 'normal' that was once your real life before things hit that fan.
but you will get thru this sammy and back on track. there is nothing holding you back right now but time and getting to the root of your main issues. and i do really think you are on the right tracks here with alot of things that need to be in place for you. just keep researching and asking those questions and you will get there. its just getting over those hurdles. look at it all as one big huge test of your endurance,strength and fortitude. believe me, getting thru my sons liver failure was something that really was soo unbelievable at times,but we got thru it all and past those hurdles and eventually everthing went amazingly well. it brang with it alot of realizations i never would have had had it not been for that big bunch or hurdles and it being such a humbling experience for our whole family. the thing is i just assumed everything would get better for me after that,only to be dealing with another totally off the wall unexpected bunch of crap. but having gotten thru everything we did with our son really prepared me for my ongoing bunch of medical nightmares. it helps to have already been thru things that are just completley out of your hands to have to deal with since my body is not in any way shape or form simply under MY control anymore. just have faith hon and this will be gotten thru and you will come out the other side with many realizations of yourself and a much healtheir person to boot. it just sucks to have to go thru all this. but hey,you always have me,lol.
well gotta fly here. just keep pushing things hon til you get the answers,no matter how you have to do it. you do deserve that much. Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Gee Mountain, you had alot of what I had done. I'll tell you that shoulder/arm still hurts,of course as Marcia would say we are "freaks" so can't go so much by us, just don't let anything go, learn from us. I get the most relief with ice. I will say the Osteo. said no more heat. I am loosing ROM fast in that arm again. I hope I did not go through that dang surgery & not get my movement back. I will let you know if I think of anything or hear anything that may be helpful. I do at times have to put the sling back on if it acts up to calm it down. Let us know how it goes.
Marcia, you are my rock! I will not (at least for now) give up my gardening. I was the same as you, nicest yard on the block, but my husband & I worked together, although I did most of the actual work. My new yard is huge so it takes alot of time. My husband has warned me to leave it be, I really am abit oc, its drivng me crazy, it needs work & between my husbands work hrs. & the darn crummy weather we are not getting much done. By now everyting would be done, trimming, new mulch, weeding, pruning & on & on...
Heck we have a rider for the back & I tempted to try ti, but then my ribs tell me don't do it lady.
I don't know Marcia about this treatment, that shoulder really hurts. The osteo kind of put her weight on it to do something & it just hurts & so does the other areas, heck more muscle spasms then before. I am really worried here, I am quickly loosing any ROM I gained through surgery. I am tired of the pain & going to have to talk to the surgeon about pm, if the myofascial is what he believes I have & after all he told me then he should have no problem recommending it, but who knows. I am not going to stop living, you know, heck this is getting out of control here. Everything bothers that left side, think about it the ribs pretty much are involved with any type of movement.
I am definantly asking about that muscle, & more then one person to. Although I am not sure what can be done about it. Every doc. has been trying to find more or less the origin of the pain well I believe that is it. I am willing to try the osteo & rest but not forever & not at the risk of flaring that pain up sky high for several days. I like her & hope she has a plan b. If this continues I won't be able to even make it to her office. It is not near by & I am on my own starting next visit. I will try to take the MR before the next treatment, but running out of the valium & god knows I am afraid to ask for more, even though this script is from over 6 mnths ago. I just don't trust any doctors right now, & the osteo is more of a naturalistic & does not prescribe to many meds at all, you know just a bandaide thing, heck like we don't know that, can't get the dang pants down in the morning or the tp off the roll hardly till I take the dang meds. So trust me I know that.
Life sure does change with all of this. I know now when my little scottish motherinlaw use to say "if you don't have your health, you don't have much of anything". I still can't believe this is my life, especially having ADHD, it is abit of a cruel twist of fate. What do you think about this treatment & what is the best way to approach this surgeon about PM?
I have to at least give the osteo a good chance because this is what the surgeon wants, but she better have more options with treaments other wise I am paying her to put me in more pain & then I will defianantly be givng any pm I see alot of my money. It is all abit crazy! I have a house full of teenagers this weekend so I better get moving & make sure I have half the grocery store in my house. I could not say no, my daughter had an honors ceremony for school & is such a good student, not that I say no much anyway. I just hope none of these girls have PMS this weekend because I just started & that my friend is always the straw the breaks the camels back every dang month, yes I know dang is my favorite word today. Let me know what you think, Sammy
i DO think you need to give this osteo a good solid chance just to see what she can do for you. different things can be tried and it is a progressive type of therepy,ya know what i mean? she will probably start doing other things with you as things start to change. its all a 'process" just like PT. the one huge thing you still need to do here hon is to find out once and for all whether or not your SNS is actually playing a big or even smaller part in your pain process. i just have this feeling hon that this 'could' be an underlying issue in there. it would explain alot ya know?
the thing is,you have had that sweating since way pre op which would be idicative of at least some level of SNS involvement. and all the other little changes and having pain that is way out of proportion for your "situation' ,well,it just needs to be evaluated so you can either treat it appropriately or start in a new direction. just finding out what exactly is involved in your particular pain process would kid of dictate the overall treatment. the myofascial pain can also just be killer at times too. between the trigger points which i KNOW you just have to have given whats gone on there,and the fascia being inflammed(which tightens it up) is part of the pain process,you just have to find every contributor here in order to just know better where you stand and also just what overall,you are actually dealing with. some of those contributors just have not yet been ruled out either way.
i would get an appt with your surgeon and have a heart to heart about what is best for 'sammy'. that would include discussing ruling out the SNS involvement and a referral to the pain clinic who can do that stellate for you too. ask him what your options are here hon. he owes you the info ya know? he KNOWS how truely painful this has been and just is for you or believe me,he would have stopped Rxing for you long ago. surgeons do not normally go this far with the narcotics. its just the way they are,believe me. find out what your PM options are thru your ins so you have that info in hand when you see him. i would also ask him outright given your ongoing symptoms just what he feels about possible SNS involvement too. he HAS TO have formed some sort of impression about that by now,hes a surgeon and he KNOWS what RSD actually is. simply tell him that you have researched RSD or sympathetic damage and you do "fit' within that area and see what he says about it. its simply the more you actually KNOW going into this appt,the better questions you can ask(and understand what he is actually saying too) and the more on the same page you will be with the surgeon. believe me sammy,in this type of situation,the more you actually know about "your' situation and possible contributors the more empowered you will feel to ask those questions. i have been where you are way too many times to count. this just needs to be done,the 'talk'.
also obtaining all this surgeons records from your visits(before you see him) will give you a better idea where his head is at and the overall impression of your situation as he sees it,you know what i mean? it gives you that little bit of special insight into things to just know what he has been thinking about you and your recovery process all along. i have found some really important info just reading thus surgeons clinic notes during recovery processes that i wondered about and had confirmered either way just by reading what was in his head after a visit. its just kind of important for you to actually know whats in his head before you see him for this particular visit,thats all. his impressions would just be inthis stuff. its just another 'tool' to help you along sammy.
in most cases,with surgeons anyway,what you get as far as the "clinic visit notes" are actually,usually inthe form of a letter that gets sent to the referring primary or other referring doc that is just giving them an update on the patient they referred for surgery. just a bit different than what you would get from your primary if you got HIS notes,ya know? but ANY additional info you can obtain from your surgeon before you see him again would just give you alot more info and just knowing where his head is at is crucial for you. it helps alot or i wouldn;t be telling you to do this hon.
of course,during the course of this type of conversation,PM would come up too. you just really need to get this set in motion the sooner the better sammy. and that injection needs to just be done too. if nothing else,do that research on the symtoms and also tell him you know someone with SNS generated pain like RSD or the newer name CRPS,and that this person really thinks you do have at least some level of SNS involvement in your particular pain process and just see where he goes from there ya know? your symptomology both pre and post op just fit alot of the symptoms hon.
you just really do need to have an open honest discussion about pain management and possible contributors to your pain,and of course,what your options are here. i would also ask him if he could help you out with that valium since it has been helping all along.he knows how much value there is in just being able to calm down the area with valium from time to time. considering the myofascial involvement,he knows,trust me. just tell him you desperately need answers and a sense of direction and that you NEED someone to manage your pain. tell him all your true fears about being left to fend for yourself. he knows where you are at already with this hon,bringing it up would be pretty normal considering the situation and what this has caused for you in plain suffering. in other worrds sammy,you are not telling him anything he doesn't already know ya know? this pain process just HAS to be managed by someone who understands pain generators and that would be a good PM. this is just desperately needed right now for you to at least have some peace of mind and some sense of direction. hanging in limbo,espescially when scared to death about alot of things just simply sucks. been there done that one to death. your surgeon just owes you this info and a referral to someone who can best help you right now with pain. believe me sammy,he will be more than happy to be able to not have to rx anymore for you. most surgeons just HATE that stuff anyways. most,unless there is some sort of special circumstances just wont normally go over that six week mark. ya just need a chat with the surgeon hon. just be prepared and do research on things and obtain the right info BEFORE you see him. as before,write down all pertinent questions,then make sure to ask them. simply tell him that you have a list of questions that NEED some answers and then let er rip.
i see my ortho on this tuesday. i am not sure if he is going to actually release me yet or what since i am still working thru PT,but for me,that is going to be an ongoing thing anyways,so who knows. i am still having good and bad days and periods of time thruout the day that can be ugly. but some of them i am bringing on myself by simply overdoing things too. its just way too hard to sit and watch all my outside work go to hell in a handbasket so i do the little increments of stuff then go back inside for awhile and do nothing and try again. now i have the dang bunnies eating my very very favorite flowers? the asiatic lillies? little bas*&^%$!!! i DID have like fifteen different varieties before the little suckers started eating them from the bottom up. grrrrr. as soon as they pop thru the soil and grow about an inch or two,bam the suckers are all over them. they are just too wide spaced for me to actually fence them in. haven't quite figured out just how i am going to get them, but i will,bwaaaa haaaa haaa. they will pay!
okay,i have to stop now,i am getting a bit crazed. just have that talk sweetie. you just HAVE TO know things and who will be manageing your pain issues,at least til this hopefully resolves itself. just try and not 'do' too much,K? and i will try too. i have to go track some wild game now. Marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Marcia, You have got to be kidding me, we just have to much in common, I have got the same flowers & the same problem. Your ahead of me with the flowers because of course I am abit more north. I have the same problem. I have so many rabbits you can sit & watch them play all day. They nibble the dang flowers till there is nothing left & I have tried everything. Dog hair, pepper, the hot pepper spray, makes me so mad. Those flowers have not even got a chance to bloom for two years. In fact I noticed one of them is barely coming up this year. I was just asking someone the other day what else to try. They scare away easily so I am putting another set of wind chimes up, but heck half the time there is not enough wind to do anything. I work so hard in my flower gardens & the dang rabbits eat my favorite flowers. I fenced in my garden good but don't really want to put a fence in my front. I am going to ask when I go back to the nursey, cant believe I forgot to ask when I was there. Let me know if you find anything that works.
Ok woke up with my index finger on my right hand hurting like mad, it is abit swollen up. Both shoulders are so painful this morning. I just don't get it. Cant lift either arm up. This is really getting to me. The left shoulder feels like it wants to snap. It feels like I was holding a very heavy object above my head all night. Crazy. Both sides are just aching, especially in the dang scapula area. Its getting abit more confusing.
Do you really think I may have the SNS thing going on? The left hand sweats still but very little. I am not sure how I would have developed it.
I could kick myself for not asking the surgeon about PM when he phoned. He kind of sounded like it was so final, I am worried he is passing me off to this osteo doc. who does not deal in pain meds at all. I have no choice but to ask when I call for my next script about an appointment for PM, it is coming to that 6mnth mark for my surgery. I have been worried sick about it taking months to get in & having noone to treat the pain while waiting, do you think the surgeon would do that? I do believe he knows I am in pain but you just never know. I dont trust my pcp anymore every since he slapped that "its just inflammtion of the chest wall" if he would looked at the dang records he would have known this has been an ongoing problem, heck he is the one who started me on oxy last august.
I do know it is time to address the issue of PM, I did try but he said to wait to that 6mnth mark & for the MRI & osteo appointments. I can't live my life being this limited. I was thinkng the other day, if I was a man & the wage earner I wonder if I would have already been in PM, you know. Well I still need to be able to contribute to this family so something has got to be done. I am not just talking about narcotics, what about someone who can try other methods, that is why I want into PM. Heck I am thrilled when I can cut back by 1/2 dose of my pain meds, but then again thats probably because I am not working & taking the motrin to. I have just started the stronger dose of the compound cream. There was a different guy there, & I got to say he had me so peeved, told me there has been noone this stuff has not helped & the lido did this & that, I stopped him & said "I was on the Lidoderm patches & they did not one thing", I was on the strongest steroids & nothing", the other chemist was walking in when he was talking to me & came up to the counter he remembered me from the week before, I do not like when someone makes promises that something will work, then give me my dang money back it it don't. I have been so disappointed by promises in the past that I see red when someone starts that crap. The stronger the dose the more expensive at tune of 50.00 for aweeks supply because the area that I have jto apply it is so large. I have to contact my insurance to see if they will reimburse me, they cover the patches so why not his cream. This guy did not even know what the my problem was before making these statements. I ask the other chemist about if it would help the myofascial & he said if there is inflammation then there is a chance it will, but if this strength did not make any difference then he does not think a stronger dose will work either, he did say that they have alot of success with this compound & he will be surprised if I dont get some kind of relief. So we will see. At least he was abit more realistic. I have a low tolerance for people who make statements or promises that can't be kept. I am tired of having my hopes up & they don't realize how depressing it is when you try all these things that everyone promises you will help & nothing comes of it.
I am worried sick over this shoulder, I am telling you after all that pain from surgery & before, that shoulder is being neglected & going down hill. I am not allowing the osteo to do to that shoulder what she did last week. She had me hang it off the table & beared down on it, well its been sore every since, don't you think its abit soon for that kind of thing?
That pain has even been going up the neck to give me a headache on that side. Hurts behind the ear, all the way up to the temple, even the eye area looks abit swollen, scares the crap out of me because of my past history of migraines, that is one pain I don't get rid of easily & it can last up to a month. The whole area above the scapula going into the neck is swollen & in spasm. To top it all off I have had cramps since thursday from my monthly visiter, I don't usually cramp for that many days. Strange all that perc. & don't help the cramping much. I told my husbnd if a migraines kicks in I am done, & he knows it. I am mad at myself for allowing her be so aggressive with that side, but I really did not realize till she went to do it. I'll tell you what a week.
I hope your recovery is going alot better then mine. Your a week behind me for that 6 mnth. mark. Does your surgeon treat up till that time to? How is the other shoulder doing? I think we need a weekend trip to a spa or something. The only thing I look forward to is my gardening & if I can't do that I will not be a happy camper. I am using the lavender & peppermint oils to soothe abit. I'll tell you at times it works better then all those prescription drugs. My husband has had the virus with all the congestion, I put the oils on him & he said he has not slept that good in over 6 mnths, said to make sure I get some more. That is saying something that man poo poos everything. These oils are the real deal & a drop is super strong, & believe me I am a doubting thomas but they do help at times. To many people get relief from them to ignore it, & hey its all natrual so can't hurt. That is something you should consider, there is one in particular that I really like, my sisterinlaw is dropping some off for me to try & if I get relief I will let you know. I'll talk to you soon, Got to go ice, Sammy
